What If I Give My Baby Hepatitis C?

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New breakthrough treatments for hepatitis C have not yet been tested on children, though there are tens of thousands of infected kids in the United States.

It’s a common concern for women diagnosed with hepatitis C:
Will I pass the disease onto my child?

Luckily, only 5 or 6 percent of mothers with hepatitis C
pass the disease along to their babies, said Dr.
Naim Alkhouri, a pediatric gastroenterologist at the Cleveland Clinic.

Still, the American Liver Foundation (ALF) estimates
there are between 23,000 and 46,000 children in the United States living
with hepatitis C. New medications with cure rates close to 100 percent and
relatively few side effects have revolutionized hepatitis C treatment for
adults, but not much has changed for children.

Gastroenterologists still treat hepatitis C-infected
children with interferon and twice-daily, oral ribavirin. This was standard for
adult treatment too, until the U.S. Food and Drug Administration (FDA) approved
sofosbuvir (Sovaldi) last year.

Interferon and ribavirin both cause serious side effects,
including depression and fatigue, though doctors say the drugs take less of a
toll on children than adults. Still, the cure rate remains low, at about 45
percent for genotype 1 infections in children after almost a year of treatment,
according to the ALF. Not only does the interferon-ribavirin combination have a
low cure rate, but interferon can also slow growth in children.

Pregnant women cannot be treated
for hepatitis C, Alkhouri said, because ribavirin causes birth defects. Interferon-ribavirin
treatment is not
FDA-approved for children under the age of three.

A baby also can’t be tested for
hepatitis C at birth because it may falsely test positive, Alkhouri said. It
can take a year and a half or more to know for sure if a child is infected.

None of the new hepatitis C medications recently approved
by the FDA, such as Sovaldi and ledipasvir-sofosbuvir (Harvoni), have been proven safe for use
in children.

Alkhouri, a member of the American College of Gastroenterology, said
pharmaceutical companies began clinical trials in children some time ago with
telaprevir (Incivek). Incivek came out prior to Sovaldi and Harvoni. The
medication landscape is changing so fast that one of the Incivek trials was
canceled, he added, when Sovaldi and Harvoni came on the market.He believes it
makes sense to wait until the dust settles as new hepatitis medications come to
market before beginning clinical trials in kids. He said we need to know which
medications are the safest and most effective among adults before beginning
trials on children.

Are Children Left Out of Treatment Breakthroughs?

That’s not the kind of news mothers like Nancy Netherland
want to hear.

Netherland adopted two children
from a mother she knew had hepatitis C. She hoped neither would test positive,
but eventually she learned that one of them had the disease when the child
became old enough to test.

She told Healthline she’s waiting
for clinical trials to begin on new treatments for children that include
Sovaldi. In the meantime, she has tried to raise awareness of the issue of
children with hepatitis C and is in the process of creating an online resource
for parents.

My goal is … to make sure no other parent has to face what I have, having a child with an acute and potentially lethal form of HCV and no effective treatments approved by the FDA, unavailable in the USA, not affordable even if they were.

Nancy Netherland

Netherland, who worked as an
artist in residence at a San Francisco hospital, has strong ties to the medical
community. She knows where to go for the best healthcare for her daughter, and
it helps living in a world-class city like San Francisco, she said.

She cannot help but feel that
children are being left behind when it comes to the new breakthroughs in
hepatitis C treatment. Though her daughter is very active and plans on being a
lifeguard someday, she does have occasional bouts of illness.

“My goal is two-fold, to take care
of my own child … and to keep her healthy and not wait for her liver to degrade
… and to make sure no other parent has to face what I have, having a child with
an acute and potentially lethal form of HCV and no effective treatments
approved by the FDA, unavailable in the USA, not affordable even if they were.”

How Young People Can Stay Safe from Hepatitis C

About 40 percent of children
infected with hepatitis C by their mothers spontaneously clear the virus on
their own. Hepatitis C is a very slow-moving disease and most young people would
never know they are infected. But in about one-fourth of infected children, the
disease can progress quickly and require treatment, according
to the ALF.

A fraction of children born with
hepatitis C, including those born to mothers who did not have proper prenatal
care, can end up with chronic infections. For women who are drug users and are co-infected
with HIV, the risk of transmitting hepatitis C to their child increases to as
much as 15 percent, Alkhouri said.

“I once had a child 17 years old
who wanted to donate blood, and it turned out she had [hepatitis C],” Alkhouri told
Healthline.

His tests confirmed a chronic
infection. “Going back, she had no risk factors. When we tested mom, who was in
her 40s or 50s, she also had it. The mom admitted to using cocaine.”

Blood that gets onto a straw or
rolled paper used to snort cocaine and other drugs is one common way the virus is
transmitted, Alkhouri said.

Dr. David Bernstein, chief of
hepatology at the Center for Liver Disease at North Shore-LIJ Health System and
a fellow of the American College of Gastroenterology, adds that children and
young adults should be careful when considering getting tattoos or piercings.
Some people have contracted hepatitis C that way, too, he said. Always ask about
sanitation procedures at the studio when getting tattooed or pierced.

Parents Will Do ‘Whatever it Takes’

Although most children in America
with hepatitis C got it from their mothers, some do get infected by using
illegal drugs. America’s ongoing battle with painkiller addiction has led to injection
heroin use even among teens.

The majority of Americans with
hepatitis C are baby boomers. Many contracted it from blood transfusions before
the virus was discovered in the 1990s, or from unsanitary conditions. Prior to
the HIV epidemic, America’s sanitation measures in healthcare settings were not
as thorough.

I am clear based on what happened with HIV/AIDS that it’s better to be prepared with multiple options than to wait for the market demand to catch up with the public health realities and needs of vulnerable and disenfranchised populations.

Nancy Netherland

Children of baby boomers who know
their parents are infected should get tested for the virus, Alkhouri said.
Longtime sexual partners of hepatitis C-infected people should also be tested,
he added. But he noted that the chances of contracting hepatitis C from
heterosexual sex are extremely low.

Those who have homosexual sex,
particularly if they are already infected with HIV, are at greater risk of
contracting hepatitis C.

Netherland told Healthline she
will do whatever it takes to get her daughter the treatment she needs, even if
it means going abroad. She said she has even talked to specialty teams about
treating her daughter with off-label medications if need be.

“I hope this won’t be the case … but
I am clear based on what happened with HIV/AIDS that it’s better to be prepared
with multiple options than to wait for the market demand to catch up with the
public health realities and needs of vulnerable and disenfranchised
populations,” she said. “In the meantime, I wait with bated breath and wonder
each time my daughter is fatigued for a few days in a row, complains of pain,
or has itchy skin.”